Feb. 25, 2026

Beyond the Diagnosis: Understanding the FASD Brain (Part 2)

Send a text We dig into the real-life supports that help neurodivergent brains thrive, from the hard science of FASD to daily tools for executive function, transitions, sensory needs, and affect regulation. RJ Formanek and Ann Kagarise share candid stories, and swap strategies that trade shame for structure and self-forgiveness. • neuroanatomy changes shaping behavior and perception • amygdala overdrive, safety cues and early supports • executive function limits and practical scaffolds • tim...

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Season 4

Send a text

We dig into the real-life supports that help neurodivergent brains thrive, from the hard science of FASD to daily tools for executive function, transitions, sensory needs, and affect regulation. RJ Formanek and Ann Kagarise share candid stories, and swap strategies that trade shame for structure and self-forgiveness.

• neuroanatomy changes shaping behavior and perception
• amygdala overdrive, safety cues and early supports
• executive function limits and practical scaffolds
• time blindness, chunking and accountability buddies
• transitions as processing needs, not defiance
• cause and effect gaps and replacing why with how
• adaptive skills, dismaturity and external brains
• affect regulation, anxiety and non-med supports
• sensory profiles, sleep, texture and travel hacks
• motor planning, handwriting and kind repetition
• self-advocacy at work and reasonable accommodations
• self-forgiveness as the base for growth

Please share it. Send it to a teacher or a therapist or foster or adoptive parent or caregiver, someone who needs to understand what is really going on beneath the surface. Go to Flying with Broken Wings and Red Shoes Rock on Facebook.


Support the show

@Real Talk with Tina and Ann

Chapters

00:09 - Welcome Back And Focus Reset

00:59 - Neuroanatomy, Scans, And Real Brain Changes

04:18 - Vision, Depth Perception, And Sensory Circuits

06:04 - Amygdala, Hypervigilance, And Early Supports

08:06 - Executive Function Explained In Real Life

12:01 - Impulsivity, Anchors, And Self-Pausing

13:34 - Time Blindness And Planning Workarounds

15:37 - Transitions And Processing Time

19:26 - Cause And Effect, Memory, And Shame

22:47 - Chunking Tasks And Managing Stress

25:29 - Adaptive Skills, Dismaturity, And Safety

29:36 - Travel Routines, External Brains, And Boundaries

33:34 - Affect Regulation And Anxiety

37:24 - Accommodations, Self-Advocacy, And Work

41:02 - Sensory Processing, Sleep, And Food Textures

47:28 - Loud Vs. Quiet: Finding Focus

48:37 - Motor Skills, Writing, And Practice

53:07 - Self-Forgiveness, Grace, And Hopeful Closing

Transcript
WEBVTT

00:00:08.560 --> 00:00:10.560
Welcome to Real Talk with Tina and Anne.

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I am Anne.

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If you just joined us, this is part two of our conversation with RJ Forman Act.

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And honestly, if you haven't listened to part one yet, we really encourage you to go back because we laid the foundation for understanding FASD as a brain-based disability and why behavior is never just behavior.

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In part one, we talked about the 10 brain domains affected by FASD, the realities families face behind closed doors, and the powerful shift that happens when we move from judgment to understanding.

00:00:37.439 --> 00:00:38.479
Today we go deeper.

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We're going to talk about what support actually looks like in real life, how to respond when traditional approaches don't work, how to reframe expectations without losing hope, and why compassion and structure together can completely change outcomes because living with neurodivergence isn't theory, it's daily life.

00:00:56.399 --> 00:00:57.520
So let's jump in.

00:00:57.600 --> 00:00:58.479
Here is part two.

00:00:58.640 --> 00:01:12.480
Well, I want to talk about neuroanatomy and neurophysiology because the structural brain differences, seizures and scan findings, and you know, we realize that this really is physical.

00:01:12.719 --> 00:01:17.920
And where this affects me in a couple of ways, I want to explain it and ask you.

00:01:18.159 --> 00:01:24.480
Um, I have a couple things that happen to me whenever I'm in an overstimulated situation.

00:01:24.799 --> 00:01:41.680
Uh, one is my spatial sense completely goes, and I'll go into certain stores or I'll go into a situation where I can't hold on to something and it's really open, and all of a sudden I lose my complete spatial sense and I have to hold on to something.

00:01:42.000 --> 00:01:48.319
This also happens to me like I know exactly what I need to have a really good conversation in a meeting.

00:01:48.480 --> 00:01:49.280
I need space.

00:01:49.439 --> 00:02:02.640
I can't have somebody expecting me to sit directly across from them and me look at them, expect eye contact, people sitting next to me, a crowded room or even in a small space.

00:02:02.799 --> 00:02:11.599
And because my brain literally, and I've had this all of my life, if I'm in a situation like that, I'll I'll feel like it's in my brain.

00:02:11.759 --> 00:02:13.759
I'll feel like a short circuit.

00:02:13.919 --> 00:02:21.840
But if I move away, if I look down, if I can talk to the person and be like this, if I can have all those things in place, I'm fine.

00:02:22.000 --> 00:02:29.199
But if you start inserting all these inputs into my brain at one time, I literally short circuit.

00:02:29.520 --> 00:02:30.800
I can understand that.

00:02:30.960 --> 00:02:42.080
It's uh a problem I I have with um basically what you're describing because there are a lot of thoughts going through my mind because all of the thoughts are pictures, that's taken up a whole lot of brain space.

00:02:42.159 --> 00:02:49.280
All those megabytes and millibytes are constantly flashing, and eventually it just gets to be just a total test show.

00:02:49.439 --> 00:03:00.000
But yeah, uh neuroanatomy or neurophysiology is um basically understanding one of the things that often happens with FASD is a smaller head size.

00:03:01.039 --> 00:03:10.960
So that can affect brain development, and also when we understand how FASD in the early parts, okay, so cells start out flat.

00:03:11.599 --> 00:03:13.439
They're not round like we know them.

00:03:13.680 --> 00:03:25.039
And if alcohol is introduced to those flattened out cells and covering them, when the cells close, that alcohol is in the middle of the cell, it's not just on the other side.

00:03:25.199 --> 00:03:37.199
So we have to understand that early early onset of alcohol can be very damaging to the neurons that the brain uses as a structure or scaffolding.

00:03:37.360 --> 00:03:40.719
Basically, the two by fours that you use to hold up the walls.

00:03:40.879 --> 00:03:45.599
Those are neurons, and those are profoundly affected at this time.

00:03:45.759 --> 00:03:58.240
So what ends up happening is our brains develop differently, they're shaped differently, parts aren't necessarily formed the same way that they would have been without the introduction of alcohol.

00:03:58.479 --> 00:04:01.520
So that's where we have to understand neurophysiology.

00:04:01.599 --> 00:04:06.639
I don't want to be too dramatic, but some parts of the brain might not be whole.

00:04:07.280 --> 00:04:10.159
So understanding that is very important.

00:04:10.240 --> 00:04:13.439
It's the brain domain, the physicality of the brain.

00:04:13.520 --> 00:04:16.720
And that affects wildly how it works.

00:04:17.040 --> 00:04:17.839
Yeah, yeah.

00:04:18.079 --> 00:04:47.920
Well, my early neurologist, when I was in kindergarten, said that I didn't have well, the retention and the comprehension and the ability to understand, but I also the part of my brain where it was also damaged pretty significantly was in my eyes, where I don't have the ability, I don't have depth perception, and it's not in my eyes, is the problem, but I don't um converge.

00:04:48.079 --> 00:04:52.560
My eyes don't converge, and I see two different things.

00:04:52.879 --> 00:04:57.439
Fortunately, my brain is very kind and it shut off my left eye.

00:04:57.600 --> 00:05:12.800
And the only time I ever feel it is when somebody, like in church or wherever, you know, they sit in front of me, and they sit in front of my left eye, and then my or my right eye, they'll sit in front of my right eye, and my left eye will have to kick in and work.

00:05:12.959 --> 00:05:15.439
And I'm like, oh, wait a second.

00:05:15.600 --> 00:05:22.639
And I can actually feel it in my brain that that it shifted from my left eye to my right eye.

00:05:23.120 --> 00:05:25.920
Well, Noah's really weird about what you're talking about.

00:05:26.240 --> 00:05:34.079
Um circuits that um are involved with our eyes at the very back of our head.

00:05:35.199 --> 00:05:38.560
But that is so weird, it's kind of cool.

00:05:39.120 --> 00:05:43.279
You would think that um brain, eyes right directly there.

00:05:43.600 --> 00:05:45.920
No, no, it's all the way at the back of our head.

00:05:46.079 --> 00:05:52.800
That's why people see scars when they get hit in the back of the head, because that's what the business center for your brain actually is.

00:05:54.160 --> 00:05:58.079
Understanding that part of the brain that that can be affected.

00:05:58.240 --> 00:06:04.399
Um, often we see the amygdala is is highly overrepresented.

00:06:04.560 --> 00:06:10.480
Now, the amygdala is responsible for emotional regulation, fight or flight.

00:06:11.120 --> 00:06:12.399
Um I got that too.

00:06:13.120 --> 00:06:15.040
Why are we always up and ready to go?

00:06:15.279 --> 00:06:20.240
Well, that's a part of our brain that is highly developed in a lot of cases.

00:06:20.480 --> 00:06:27.519
Now, there is a lot of um conjecture and discussion about whether that's nature or nurture.

00:06:27.680 --> 00:06:28.879
It could be both.

00:06:29.199 --> 00:06:40.480
Because it could be experien experiential that causes us to develop this hyper-vigilance and that causes us to grow, which is why you can often see us freaking out over the smallest things.

00:06:40.560 --> 00:06:44.639
That's our amygdala, um, throwing a little bit of a temper tantrum.

00:06:45.199 --> 00:06:52.879
And there are ways to make people, again, feel safe, feel connected, and not feel that they have to go to those extremes.

00:06:53.199 --> 00:07:00.800
But like anything else, if this secondary symptom goes on for too long, it becomes tertiary.

00:07:00.879 --> 00:07:03.920
And tertiary is almost effectively permanent.

00:07:04.000 --> 00:07:06.399
It's something that they'll always have to deal with.

00:07:06.560 --> 00:07:13.360
Whereas if we can effectively deal with it earlier, it doesn't have to become a permanent brain condition.

00:07:14.160 --> 00:07:16.959
Our brains, neuroplasticity is a thing.

00:07:17.279 --> 00:07:19.040
We can affect the outcome.

00:07:19.519 --> 00:07:28.319
We get to our kids soon enough with the appropriate supports and understanding they're going to be miles ahead of where you and I were at that same age.

00:07:28.480 --> 00:07:30.720
So you're doing really good work, what you're doing.

00:07:30.959 --> 00:07:34.480
Yeah, I they do go to a fetal alcohol clinic now.

00:07:34.800 --> 00:07:37.759
And, you know, that those things didn't exist with us.

00:07:37.839 --> 00:07:39.680
And it's new, uh even for them.

00:07:39.839 --> 00:07:41.360
I mean, it's just new.

00:07:41.519 --> 00:07:44.639
And the United States, we've talked about this, it's behind.

00:07:45.040 --> 00:07:56.319
So I'm really glad that they're starting to uh have those kind of tools and information out there for everybody so that they can get to these kids before they're 12.

00:07:56.480 --> 00:08:01.279
You know, my one son is 12, and he has all of these cognitive issues.

00:08:01.519 --> 00:08:04.480
And so, yeah, you know, the younger the better for sure.

00:08:04.800 --> 00:08:05.839
Definitely, definitely.

00:08:06.639 --> 00:08:16.240
Okay, now one of the biggest also problems in our house as a whole, because there's four of us here, um, is executive functioning.

00:08:16.399 --> 00:08:23.360
And we have touched on that a little bit, but honestly, mine can feel almost non-existent.

00:08:23.519 --> 00:08:27.519
And this is such a huge umbrella domain.

00:08:27.680 --> 00:08:37.919
So I want to talk about different parts of it because we're talking about impulsivity, time blindness, difficulty with transitions, struggles with cause and effect.

00:08:38.000 --> 00:08:49.279
And this is all part of the brain that helps planning, organizing, regulating emotions, which you just kind of talked about, and being able to shift gears and follow through.

00:08:49.360 --> 00:08:59.200
So when executive functioning is impaired, it's not just about being disorganized, it's about how the brain manages life.

00:08:59.440 --> 00:09:06.000
So let's talk about what this actually looks like and why it is so often misunderstood.

00:09:06.320 --> 00:09:10.960
Well, I think you can look at executive functioning as how you use your brain.

00:09:12.320 --> 00:09:15.600
And um, that's often how we're recognized.

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And that's why we say it's largely a brain-based disability.

00:09:19.360 --> 00:09:23.039
Because those are how people recognize that there may be something to look into.

00:09:23.200 --> 00:09:36.559
When you're looking at executive function, everything that you were talking about, absolutely, um, you'll often see planning and sequencing problems, not a realistic uh view of the time it will take to get something done.

00:09:37.519 --> 00:09:38.960
I'm constantly doing that.

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I'll be there in five minutes.

00:09:40.480 --> 00:09:43.600
Well, in 15 minutes, and I'm still not there.

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I'm on my way.

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That's not me being dishonest.

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That's my brain fooling me into thinking I could drive there that fast and not allowing for the school buses and the trains and everything else that you run into in traffic.

00:09:56.159 --> 00:09:58.240
Problem solving and organization.

00:09:58.399 --> 00:10:00.240
I'm terrible at organizing.

00:10:00.399 --> 00:10:04.720
I know people on the spectrum love to keep everything very organized.

00:10:04.799 --> 00:10:08.720
They're very neat, very, very analytical, everything in its place.

00:10:09.039 --> 00:10:09.840
That's not me.

00:10:10.000 --> 00:10:10.799
Absolutely not.

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My brain does not go there.

00:10:12.639 --> 00:10:17.759
It's not, it's uncomfortable for me to be in a sterile environment like that.

00:10:18.000 --> 00:10:23.120
One of the other things that I again I often dealt with was impulse control.

00:10:23.679 --> 00:10:25.120
I was just gonna talk about that.

00:10:25.200 --> 00:10:25.440
Yeah.

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I'm gonna do it.

00:10:26.960 --> 00:10:32.639
And um I I often say there was never a dare that I wouldn't take.

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And that was my Achilles heel because people knew if they dared me to do something, I would do it.

00:10:37.600 --> 00:10:40.639
I don't know, it was childish or uh disinterity.

00:10:41.039 --> 00:10:45.279
I was always getting into the worst trouble because my friend just go, I dare you.

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I got to.

00:10:47.840 --> 00:10:51.919
So I didn't understand how to fight those impulses.

00:10:52.000 --> 00:10:57.600
Um, since then I've learned if I feel an impulse like that, talk to someone around me.

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Say, I'm gonna go out and uh dance naked on the back deck.

00:11:02.080 --> 00:11:03.200
Is that a good idea?

00:11:03.360 --> 00:11:04.639
No, that's not a good idea.

00:11:04.720 --> 00:11:05.360
Are you sure?

00:11:05.519 --> 00:11:06.000
Yep.

00:11:06.639 --> 00:11:07.600
Okay, I'm not gonna do it.

00:11:07.679 --> 00:11:11.039
I'm not gonna say I'm I'm going on the back deck because I get arrested.

00:11:11.120 --> 00:11:14.399
But you know, just some sort of wild idea that I come up with.

00:11:14.559 --> 00:11:15.919
I live with my son.

00:11:16.159 --> 00:11:19.279
My son is is is my anchor.

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He's able to.

00:11:21.440 --> 00:11:23.919
And it's sometimes it's more serious things.

00:11:24.080 --> 00:11:26.799
I'll get angry at someone, or someone will do something else.

00:11:27.120 --> 00:11:28.159
I'm gonna go over there.

00:11:28.320 --> 00:11:29.759
Maybe you don't want to do that.

00:11:29.919 --> 00:11:30.799
I'm gonna call him.

00:11:30.879 --> 00:11:31.600
No, no, no.

00:11:31.679 --> 00:11:33.120
Maybe it's take a while.

00:11:33.360 --> 00:11:40.240
So having that person to sort of give you pause to think about that impulse is very important.

00:11:40.480 --> 00:11:43.440
Yeah, executive function is also hyperactivity.

00:11:43.600 --> 00:11:51.360
My hands are all over the place, everything is moving, I'm the person whose knees bouncing up and down when I'm sitting there, and things like that.

00:11:51.600 --> 00:11:55.360
Yeah, um, and that energy needs to be burned off.

00:11:55.600 --> 00:11:57.279
I can't contain it.

00:11:57.440 --> 00:12:05.600
So I have to find a way to without disrupting the whole room, whether it's a fidget or something in my pocket that I'm playing with in my jacket.

00:12:06.080 --> 00:12:06.960
Always, always.

00:12:07.840 --> 00:12:11.039
I'm always doing my things with my hands and my fingers.

00:12:12.000 --> 00:12:18.799
And and that is an executive function deficit there that I need to do that to keep in the moment.

00:12:20.720 --> 00:12:28.480
Because my brain will just take me to another world in no time at all, unless I, you know, actively want to stay in the moment.

00:12:28.799 --> 00:12:33.039
In my house, I can't tell you how many times they'll say my name before I say, huh?

00:12:34.639 --> 00:12:37.200
Because I really am in my own little world.

00:12:37.519 --> 00:12:52.320
Um, but I wanted to I laughed when you talked about going out on the deck and you know, dancing naked or whatever, because you know, I was at band camp, I can remember in high school, and there was more than just me.

00:12:52.480 --> 00:12:54.159
So I wasn't the only one.

00:12:54.399 --> 00:12:56.559
But they said, you know, go streaking.

00:12:56.720 --> 00:12:57.759
And so I did.

00:12:58.000 --> 00:13:01.120
And we just ran through the Boy Scout camp streaking.

00:13:01.279 --> 00:13:07.600
You know, I mean, I did so many crazy things, and they were all on an impulse.

00:13:07.840 --> 00:13:11.279
It was just, okay, let's go, let's do it.

00:13:11.440 --> 00:13:12.320
And I was game.

00:13:12.639 --> 00:13:20.480
Stuff you would stuff you would not do in your normal life, but it was an impulse, it was a momentary thing, it sounded like fun.

00:13:20.799 --> 00:13:21.120
Yeah.

00:13:21.360 --> 00:13:26.960
Well, I mean, executive functioning is basically like the brain's air traffic control system.

00:13:27.039 --> 00:13:28.399
It's just broken down.

00:13:29.440 --> 00:13:34.480
And and it's having a difficult time figuring out how to navigate.

00:13:34.639 --> 00:13:39.840
So I wanted to ask you about time blindness, which you did mention about that.

00:13:40.080 --> 00:13:45.679
And I think that a lot of us have that, you know, it doesn't register the same way.

00:13:45.840 --> 00:13:53.120
Uh, 10 minutes, and I'll tell you why, too, is because 10 minutes and an hour feel the same to me.

00:13:53.440 --> 00:13:56.559
I don't feel the difference a lot of times.

00:13:56.720 --> 00:14:05.919
Because and I don't know if it's I just live in the moment or I'm lost in the moment, but am living, and then before I know it, I look up and it's an hour later, and I didn't even know it.

00:14:06.240 --> 00:14:13.360
Yeah, anyone who knows me knows time is an abstract, and I have a difficult time with it.

00:14:13.600 --> 00:14:19.679
It's it's something that we as humanity assign to a natural process.

00:14:20.240 --> 00:14:22.399
I can tell you where we are in the day.

00:14:22.559 --> 00:14:29.360
I can find north, south, east, or west in a city, even, just by seeing the way the light falls.

00:14:29.519 --> 00:14:39.679
I understand all of these things about how time works, but I don't understand how man segments it out and then uses that as a measure.

00:14:39.919 --> 00:14:42.480
My brain doesn't honestly understand.

00:14:42.639 --> 00:14:52.960
I know the world works on it, but um, you know as well as anyone that you need to remind me a couple of days beforehand, before one of these things, or I'm going to totally forget it.

00:14:53.120 --> 00:15:01.279
It's not that I don't want to do it, it's not that I'm trying to forget it, but it's just again the way that my brain works.

00:15:01.440 --> 00:15:03.600
So yeah, I mean, I know you.

00:15:04.000 --> 00:15:09.519
So, and and also I have like a plan in my head weekly.

00:15:09.679 --> 00:15:11.200
I have people on weekly.

00:15:11.360 --> 00:15:18.639
So I know on Sunday I do this, on Monday I do this, you know, I remind the person, I send the link, I do all the things.

00:15:18.879 --> 00:15:20.799
So it's already there for me.

00:15:21.120 --> 00:15:25.200
But um, I I know with you and we message each other.

00:15:25.360 --> 00:15:27.919
And so I your brain is my brain.

00:15:28.080 --> 00:15:29.039
I get it.

00:15:30.000 --> 00:15:34.159
We we've we've often said that I think we do share half a brain between us.

00:15:34.639 --> 00:15:35.759
We I think so.

00:15:35.919 --> 00:15:36.799
I think so.

00:15:37.279 --> 00:15:43.840
Okay, so I want to talk about transitions because that's also a really big part of this.

00:15:44.080 --> 00:15:55.679
And transitions are hard because shifting from one thing to another zaps our brain and take shifts us right completely in a different direction that maybe we weren't expecting.

00:15:55.840 --> 00:16:13.519
And it takes time stopping one activity, starting another activity, changing environments, switching from play to homework or preferred to non or non-preferred, you know, what looks like stubbornness is really a neurological overwhelmingness.

00:16:13.759 --> 00:16:18.080
So, RJ, what do transitions feel like for you?

00:16:18.480 --> 00:16:22.879
Well, I can describe what they would look like to someone like you.

00:16:23.120 --> 00:16:29.120
Uh, say, I I'm doing something, you say, Well, let's go uh for ice cream.

00:16:29.360 --> 00:16:30.720
That sounds like a great idea.

00:16:30.960 --> 00:16:32.399
What's my first reaction gonna be?

00:16:32.559 --> 00:16:34.399
No, no, wait a minute.

00:16:34.559 --> 00:16:35.519
I like ice cream.

00:16:35.679 --> 00:16:38.639
Yes, hang on a second, I'll be right there.

00:16:38.879 --> 00:16:53.600
But I need that moment that's my brain protects me from because I can be easily overwhelmed with transitions, and when things I'm not expecting to happen are suddenly happening or I'm being drawn away, that will come up.

00:16:54.080 --> 00:16:57.120
I usually start swearing when that first happens.

00:16:57.200 --> 00:17:00.559
It's like I'll be right from with you.

00:17:01.039 --> 00:17:01.440
Yeah.

00:17:01.600 --> 00:17:06.720
Um, I mean, I try to be nice when when a transition is forced upon me.

00:17:06.880 --> 00:17:16.880
Um, when you're dealing with with kids, it's often to have good to have cues, um, you know, reminders, you know, another 10 minutes.

00:17:17.119 --> 00:17:19.359
Um five, ten more.

00:17:19.519 --> 00:17:20.559
Yeah, we do it.

00:17:20.960 --> 00:17:24.400
Make me want to start wrapping up because uh it's just about time.

00:17:24.559 --> 00:17:30.720
And that way they're not they're still gonna be annoyed, but they're not going to be that shocked annoyed.

00:17:31.359 --> 00:17:42.240
Yeah, whenever myself or I can think of one of my kids specifically is asked to stop um and move to a different whatever it is.

00:17:42.480 --> 00:18:00.960
Uh there is a slamming down of the hand, there is a stomping of feet, there is, you know, but then eventually I'm fine and I'm in, you know, but it it's just that transition to changing, and then I'm fine.

00:18:01.200 --> 00:18:03.519
And you're right, it could be a preferred.

00:18:04.160 --> 00:18:10.640
I like ice cream, but right now I was doing this, and it takes me a few moments to get there.

00:18:11.680 --> 00:18:13.359
Exactly, exactly.

00:18:13.599 --> 00:18:20.640
So it looks like initially obstinence or something could actually be just asking for processing time.

00:18:21.200 --> 00:18:21.680
Yeah.

00:18:22.000 --> 00:18:26.000
We're pretty good at giving my our kids um processing time.

00:18:26.240 --> 00:18:27.519
Not myself.

00:18:27.839 --> 00:18:31.599
I I'm not as nice about it for myself.

00:18:31.920 --> 00:18:39.519
But um, you know, writing a book and working on the podcast and doing all the things that I'm doing as you understand.

00:18:40.480 --> 00:18:42.640
We have our priorities.

00:18:42.799 --> 00:18:46.000
We have these things that we are committed to that we have to do.

00:18:46.240 --> 00:18:54.799
And the second somebody says comes in the room, maybe with a distraction, it's like, I, you know.

00:18:56.000 --> 00:18:58.079
So that that is the first reaction.

00:18:58.240 --> 00:18:59.839
I think that that could be normal, though.

00:19:00.079 --> 00:19:03.680
Not everything that we do is because we have fetal alcohol.

00:19:03.759 --> 00:19:08.319
I mean, it really could just be some of these things could be normal, you know?

00:19:08.640 --> 00:19:09.839
Absolutely, absolutely.

00:19:10.000 --> 00:19:12.799
But again, it's it's often how we're identified.

00:19:13.279 --> 00:19:13.599
Right.

00:19:13.839 --> 00:19:19.519
So because it's someone with a disability, it's automatically often attributed to that one.

00:19:19.599 --> 00:19:29.119
It could be just regular brain fatigue that anyone would have, or that that sudden shock of being concentrating on something and someone bugging you.

00:19:29.279 --> 00:19:31.680
I mean, that's a human reaction.

00:19:31.839 --> 00:19:34.880
That's not necessarily what it's going to be or anything like that.

00:19:35.200 --> 00:19:35.839
Yeah.

00:19:36.160 --> 00:19:44.960
One thing I touched on with my son, or we we talked about a little bit, and also I'll just mention it under executive functioning is a cause and effect.

00:19:45.119 --> 00:19:55.759
And, you know, you can learn the lesson, you can talk about it every day, but you're still gonna get the same behavior without the realization that you're gonna get the same result.

00:19:56.319 --> 00:20:01.119
And, you know, it's like that walking down the same street and you're gonna fall down the same hole.

00:20:01.440 --> 00:20:03.759
Oh, I didn't know that that would happen.

00:20:03.920 --> 00:20:11.839
You know, well, why didn't you know that that would you knew that this was the same street, you knew that this was the same hole, but you still continue to go down it.

00:20:12.000 --> 00:20:25.839
I don't understand sometimes, and I do have a hard time trying to parent somebody who was just like me, who made the same choices and got the same results, but never learned from it.

00:20:26.640 --> 00:20:28.960
Understanding consequences.

00:20:29.359 --> 00:20:33.359
Um, okay, often we're talking about the past.

00:20:33.839 --> 00:20:36.079
So we got memory deficits.

00:20:36.799 --> 00:20:48.640
We have uh a difficulty with abstracts, which could be the idea that you're trying to convey on on top of uh possibly poor memory, an abstract equals results.

00:20:49.359 --> 00:20:56.000
So it might be a little much executive functioning wise for um that understanding.

00:20:56.160 --> 00:21:09.039
That's a cogn cognitive thing that I think comes later with many of us, but um just you know just understanding like basic consequences.

00:21:09.119 --> 00:21:12.240
If if I go out without a jacket, I'm gonna get cold.

00:21:13.039 --> 00:21:15.680
Rather than being out somewhere and going, oh, I'm cold.

00:21:15.759 --> 00:21:16.720
Uh hello.

00:21:17.200 --> 00:21:20.960
Hello, you knew that when you went out this morning, you could have grabbed the jacket.

00:21:21.039 --> 00:21:23.519
That's not understanding a consequence.

00:21:23.839 --> 00:21:30.720
So it shows up in so many ways that are are depressing for us.

00:21:30.960 --> 00:21:31.839
It really is.

00:21:32.079 --> 00:21:32.319
Yeah.

00:21:32.720 --> 00:21:38.720
These things affect us first, like they affect the people outside of us, but we're dealing with it from the inside.

00:21:38.880 --> 00:21:45.039
And it's like when you reach your hand out and want to want to touch something, only it's over here, but your hand's over here.

00:21:45.119 --> 00:21:46.640
It's that frustration.

00:21:47.279 --> 00:21:57.279
Yeah, you know, and and asking why is not really the best way to go about it because I could ask my son all day li long, why did you do this?

00:21:57.519 --> 00:21:58.799
Why did you do this?

00:21:58.960 --> 00:21:59.759
You know, you knew.

00:22:00.960 --> 00:22:05.839
That this could happen, but why so why did you do this?

00:22:06.640 --> 00:22:16.240
Why questions and trying to apply them to why we do something is uh you're you're not gonna get an answer because I really don't think we know.

00:22:17.519 --> 00:22:25.680
Um yeah, why is often difficult for us to even understand because really abstract.

00:22:26.000 --> 00:22:42.400
Because my brain told me so because I had an impulse because um, you know, there could be any of a myriad of reasons, but yeah, trying to find justification, sometimes you just have to leave it and just say, Well, we'll try harder next time.

00:22:42.720 --> 00:22:45.599
And I think oftentimes that just brings about shame.

00:22:46.400 --> 00:22:49.599
I you know far, yeah, yeah.

00:22:49.759 --> 00:22:51.200
I I think it can.

00:22:51.839 --> 00:22:52.240
Yeah.

00:22:52.559 --> 00:22:53.920
Yeah, absolutely.

00:22:54.160 --> 00:22:56.000
I if if you try to push that.

00:22:56.160 --> 00:23:02.079
Um, but if the understanding is there that, you know, sometimes things don't always work the way they're supposed to.

00:23:02.240 --> 00:23:03.279
Yeah, don't worry about it.

00:23:03.359 --> 00:23:04.640
We'll we'll get it next time.

00:23:04.960 --> 00:23:14.000
When executive functioning isn't working well, even in basic tasks become a multi-step cognitive marathon.

00:23:14.160 --> 00:23:15.279
I mean, it just does.

00:23:15.440 --> 00:23:20.720
And tasks can feel impossible and it makes a person want to quit.

00:23:21.039 --> 00:23:27.519
I know firsthand, if I understand what to do, why can't I do it?

00:23:27.920 --> 00:23:31.200
Oh, I think we're talking a lot of ADHD stuff here.

00:23:31.359 --> 00:23:38.400
But um, for me, like when I have a presentation coming up, I have to break it down into manageable chunks.

00:23:38.559 --> 00:23:45.920
I can't do the graphics one and do the writing and do the setup to get there and uh the travel plans and everything.

00:23:46.079 --> 00:23:50.079
I have to break this all up into just different individual tasks.

00:23:51.519 --> 00:23:51.839
Yeah.

00:23:52.160 --> 00:23:59.119
So if I try push myself beyond that, then it's gonna be crap.

00:24:00.799 --> 00:24:34.319
I have like this is understanding, I have to know my own limits and not try push myself beyond that because the product in the end is not going to be my best work, and I want to do my best work, so that's exactly like the people who are in my personal life understand this that um, you know, I'm gonna be working on it, working on it, working on it, and then there's gonna be a period where suddenly nobody can talk to me because I am into that, but I've done all the pre-packaging of at ahead of time, so at that point I'm putting it all together.

00:24:34.559 --> 00:24:38.960
But if it wasn't me doing that along the way, I couldn't put it all together.

00:24:40.480 --> 00:24:46.079
Because I had the executive function problems with um sequencing and things like that.

00:24:46.319 --> 00:24:53.839
So breaking it down in small bite-sized manageable chunks is the only way that works for me.

00:24:53.920 --> 00:24:56.960
Otherwise, my heart rate goes up, I get stressed.

00:24:57.200 --> 00:25:01.440
When I get stressed, I can very easily I get mean.

00:25:01.680 --> 00:25:04.079
I get mean when I get too stressed.

00:25:04.640 --> 00:25:06.319
Yeah, I do, I can.

00:25:06.480 --> 00:25:19.119
And I often I I am a very visual person, and I look at executive functioning like, you know, here's the intention and here's the doing, and the bridge is broken.

00:25:21.279 --> 00:25:24.160
So it's really difficult to do it.

00:25:24.400 --> 00:25:26.640
It's just the bridge is broken.

00:25:26.880 --> 00:25:29.440
So we have to try to figure out how to get across.

00:25:29.680 --> 00:25:39.279
Okay, let's move to adaptive behavior and social skills because adaptive functioning isn't about intelligence, it's about developmental pacing.

00:25:39.519 --> 00:25:43.039
And autism and FASD are so enmeshed.

00:25:43.200 --> 00:25:58.799
We've talked about comorbidities and we talk about all the time that often overlaps with FASD with autism, but specifically, I want to talk about social immaturity, which is what we were talking about with the dismaturity.

00:25:58.960 --> 00:26:13.200
But I have always, and you know, why I want to talk about that right here is because I have when I'm doing every single thing that I'm doing, I have a Disney brain.

00:26:13.359 --> 00:26:15.519
And that's how I always explain it.

00:26:15.680 --> 00:26:20.960
And when I'm trying to do a lot of these things, I have a Disney brain.

00:26:21.200 --> 00:26:25.119
And that's part of the social development differences.

00:26:25.759 --> 00:26:49.920
And people assume, like we were talking about with the dismaturity at the beginning, but people assume that what they're dealing with across from them is a mature adult, and our neurodivergent brain is not, and development can be uneven, and we can be an adult age, like we said earlier, but socially and emotionally younger.

00:26:50.160 --> 00:26:57.279
So it really does make us very vulnerable, which I also explained a little bit ago earlier.

00:26:57.599 --> 00:27:08.880
But you know, where can we get the supports when these types of things are happening with the dysmaturity, with the vulnerability?

00:27:09.039 --> 00:27:32.720
And why I mention it here is because I take my external brain everywhere I go and I make it a thing that I know that when I'm entering into a situation, when I'm entering into go speak somewhere, when I'm whatever it is that I'm taking in the information different than I it's really happening.

00:27:32.960 --> 00:27:36.079
I feel a lot younger as soon as I enter.

00:27:36.240 --> 00:27:39.440
That dismaturity enters into me.

00:27:39.680 --> 00:27:43.759
I instantly feel younger, like I can't really handle this.

00:27:43.920 --> 00:27:46.960
I instantly don't feel like the adult in the room anymore.

00:27:47.279 --> 00:28:00.480
And I look to my external brain to help me navigate the room, to help me navigate what I'm supposed to be doing because I don't understand.

00:28:00.880 --> 00:28:05.200
Do you use any of those types of supports with your going out there and speaking?

00:28:05.359 --> 00:28:07.599
With your what helps do you use?

00:28:08.240 --> 00:28:28.000
Myself personally, um I've been at this for long enough that um I pretty well have become almost a self-contained unit as far as as so it's become natural for you, you know the steps, and it's been internalized.

00:28:30.160 --> 00:28:40.559
Often when I'm at a location, okay, I spend a lot of time alone because I need that time to focus and that sort of thing.

00:28:40.720 --> 00:28:42.319
So I do a lot of walking.

00:28:42.480 --> 00:28:51.920
Um the first thing the first thing that I do to get comfortable when I go to uh give a speech or something is I find out where all the exits are and I go through them.

00:28:52.240 --> 00:28:53.119
Oh, interesting.

00:28:53.839 --> 00:29:00.079
So I know the layout because for me, when the stress gets too much, I want to run.

00:29:00.240 --> 00:29:03.279
That's that's a very natural thing for me.

00:29:04.480 --> 00:29:11.039
So my adaptive behavior is often to avoid fighting if possible, and that means leaving.

00:29:11.200 --> 00:29:14.400
If I need to be in a position to fight, I will.

00:29:14.799 --> 00:29:20.880
But my first inkling is to avoid it because you have pretty things I want to take care of.

00:29:21.839 --> 00:29:29.119
And anyway, um, as far as that goes, I'm at a point where I used to stress it out.

00:29:29.200 --> 00:29:33.039
I used to have to uh like I call up friends at the airport.

00:29:33.119 --> 00:29:35.680
I hate this, I hate this, I'm the stress and everything.

00:29:35.839 --> 00:29:36.000
Okay.

00:29:36.240 --> 00:29:46.240
But I've gotten a point where I've been through it enough times, and I've been through flights that have had to land unexpectedly and things like that.

00:29:46.400 --> 00:29:51.759
And now it's it's become a lot more normal for me in that way.

00:29:51.839 --> 00:30:01.759
But I can see where um like newer people who are coming into it are dealing with these things, and that's perhaps like you're talking about, a trusted person.

00:30:02.319 --> 00:30:13.839
Um for me, it could be my son, it could be my partner, it uh could be someone I know who's at that particular conference who knows me well enough to trust.

00:30:15.200 --> 00:30:15.839
Yeah.

00:30:16.240 --> 00:30:33.359
Yeah, you know, I always look at people like you or Temple Grandin or people that are always traveling and getting up there on stage and doing their thing, and I'm just thinking about how vulnerable I feel, how um lost I sometimes feel when I go into situations like that.

00:30:33.519 --> 00:30:38.160
You put me up on the stage and I know exactly what to do and say, I know exactly.

00:30:38.640 --> 00:30:47.920
But off the stage is where I get lost before and after the anxiety that does lead up to it, because where am I sitting?

00:30:48.079 --> 00:30:49.119
I have to sit in the back.

00:30:49.279 --> 00:30:54.559
I have to figure out that you know who is sitting at my table, do and those kind of things.

00:30:54.799 --> 00:31:08.559
And so I can't, because of all the things that we have mentioned so far today, because of all those things, I can't go into situations without having um somebody to look to.

00:31:09.119 --> 00:31:15.279
And maybe it's because, like I said, with the vulnerability, and I want to know that I feel safe.

00:31:15.519 --> 00:31:17.119
Safe is a big thing.

00:31:17.440 --> 00:31:18.720
It absolutely is.

00:31:18.960 --> 00:31:22.960
And you know, um, it starts out even early as as kids.

00:31:23.119 --> 00:31:28.559
How do we often see um adaptive uh behavioral skills and social skills?

00:31:28.799 --> 00:31:36.480
Personal bound personal boundaries to people who share too much or talk about the subjects that people wouldn't normally talk about.

00:31:36.720 --> 00:31:39.440
That is an adaptive behavioral skill.

00:31:40.480 --> 00:31:50.880
It's one that's not working properly because uh most of us understand that we don't share our most personal, intimate details, but I've always had a problem with that.

00:31:51.039 --> 00:31:57.920
I've always shared things because to me it might be funny, but it might be very off-color to other people.

00:31:58.160 --> 00:32:00.799
So uh the things like that.

00:32:00.960 --> 00:32:23.599
Um uh not understanding the the social cues, and um, that can make it very frustrating, like especially doing something that I'm doing when you're dealing with so many people from airline people to taxi drivers to hotel clerks to uh just people on the street, getting the social cues so you're not you know making a fool of yourself kind of thing.

00:32:23.839 --> 00:32:28.559
Getting along socially without someone there can be very challenging.

00:32:28.720 --> 00:32:35.519
I like to have a friend around when I'm at those things, so I can, you know, just say, you know, is this a little weird?

00:32:35.599 --> 00:32:36.319
Yeah, it's a little weird.

00:32:36.480 --> 00:32:38.400
Okay, well, let's go grab a coffee then.

00:32:38.640 --> 00:32:40.319
And you know, that sort of thing.

00:32:40.640 --> 00:33:00.160
Yeah, I, you know, because the world, people in the service industries uh aren't they should be trained more, or maybe they are, but you know, I always think about the person in front of me could have an invisible difference, and we don't know about them.

00:33:00.400 --> 00:33:01.759
And that's really important.

00:33:02.000 --> 00:33:13.200
But I've gone through airports where it's like, you know, I'm going through and them and the detector went off, and they're like, hands up, and everything is like moving so fast, and we're just like, well, you're not listening to us.

00:33:13.279 --> 00:33:17.759
And I'm like, but I'm not intentionally trying to not listen to you.

00:33:18.000 --> 00:33:30.079
And so I want them to be more able to help people with invisible differences and just not assume that we're being defiant, uh, which we did talk about a little bit ago.

00:33:30.160 --> 00:33:34.480
But it does make it harder to travel and to do all of those things.

00:33:34.720 --> 00:33:43.200
There's another piece to this too, and it's one of the other domains that I want to the affect, if that's how you say affect regulation.

00:33:43.440 --> 00:33:55.119
And this is when, you know, we're talking about things like anxiety and depression and emotional overwhelmness, which you did say that we do get overwhelmed a lot easier, mood swings and severe imbalance.

00:33:55.359 --> 00:34:00.640
I really believe that we do have an imbalance in us, natural a natural imbalance.

00:34:00.799 --> 00:34:09.199
And I want people to understand that this is not someone being dramatic, you know, this is not someone being too sensitive.

00:34:09.360 --> 00:34:17.760
This is not somebody freaking out in the middle of being told, get your hands up in the in the airport, you know, when you set off a metal detector.

00:34:17.920 --> 00:34:20.559
Um, this is just how our brains work.

00:34:20.800 --> 00:34:27.199
You know, we can just go to panic and rage and shutting down, which is where I often go.

00:34:27.440 --> 00:34:32.559
And people label it as an attitude or behavior when really it is neurological flooding.

00:34:32.880 --> 00:34:40.719
Uh yeah, when when anything gets to be too much, there's got to be a circuit breaker or you're gonna burn out the whole the whole kit and caboodle.

00:34:40.880 --> 00:34:42.559
So that's the circuit breaker.

00:34:42.719 --> 00:34:49.920
Uh affect regulation is also um being able to express emotion genuine.

00:34:50.239 --> 00:34:54.880
Like I said, with my face, I'm known as having flat affect.

00:34:55.360 --> 00:34:56.480
Because me too.

00:34:56.800 --> 00:35:03.199
Unless I remember, yeah, unless I remember to smile and do all these things, I don't see the need for it.

00:35:03.760 --> 00:35:13.599
But that's again part of what they look at is because babies start smiling from whatever age or whatever.

00:35:13.760 --> 00:35:15.280
I guess I was a grumpy baby.

00:35:15.360 --> 00:35:15.920
I don't know.

00:35:16.239 --> 00:35:17.119
Were you?

00:35:17.679 --> 00:35:19.280
Did they say that about you?

00:35:19.599 --> 00:35:20.559
No, no, no.

00:35:20.719 --> 00:35:24.639
Aside from the fact that we had to have an operation two weeks after I was born.

00:35:24.960 --> 00:35:25.360
Me too.

00:35:26.000 --> 00:35:26.880
Why did you?

00:35:27.360 --> 00:35:33.840
I had a lock intestine that they had to end up cutting a chunk out of.

00:35:34.239 --> 00:35:36.960
So I have a short lower intestine.

00:35:37.280 --> 00:35:37.840
Wow.

00:35:38.159 --> 00:35:38.480
Okay.

00:35:38.800 --> 00:35:42.239
Yeah, I had to have surgery too when I was an infant as well.

00:35:42.400 --> 00:35:43.519
That's interesting.

00:35:43.840 --> 00:35:44.880
For different reasons.

00:35:45.119 --> 00:35:51.840
But that's just interesting that we both had to have surgery as as babies because I I think that that affects us too.

00:35:52.400 --> 00:35:52.960
Oh, yeah.

00:35:53.039 --> 00:36:04.239
Um, there there are other physicalities that come with FASD, and I've met a number of people who've had that very early um interventional surgeries of different sorts.

00:36:04.480 --> 00:36:08.239
I I know a young one who had the same one as I did, as a matter of fact.

00:36:08.400 --> 00:36:11.039
So it's it's not unheard of.

00:36:11.199 --> 00:36:17.679
And um, if we get back to the affect regulation, and we're talking about um anxiety and mood imbalances.

00:36:17.840 --> 00:36:31.199
This is where I was talking earlier about these are secondary conditions to the FASD, but if they carry on, they can become permanent, and if they become permanent, they can become mental health concerns.

00:36:32.159 --> 00:36:32.480
Yeah.

00:36:32.800 --> 00:36:36.480
So again, earlier is a really good thing.

00:36:36.559 --> 00:36:40.880
And some of us are going to deal with our anxieties for the rest of our lives.

00:36:41.119 --> 00:36:46.800
But the thing is that we many of us can learn to deal with that rather than be victims.

00:36:47.199 --> 00:36:51.440
Do you know other ways besides just medication to help in these areas?

00:36:51.760 --> 00:36:56.400
Um well, uh, culture is one that's very important.

00:36:56.559 --> 00:37:06.239
I think uh whether that takes the form of say religion or um some kind of a group that you can uh feel a larger part of.

00:37:06.800 --> 00:37:08.880
For me, it's very important.

00:37:09.119 --> 00:37:18.400
Uh sunlight, getting outside, getting the more I can use my limbs, these are my my my brain seems to work, kind of thing.

00:37:18.559 --> 00:37:21.039
And and we go back to what we're talking about, taking breaks.

00:37:21.119 --> 00:37:25.199
I will take take a break and take a walk outside while I'm in the middle of of working.

00:37:25.360 --> 00:37:26.639
I just need to do that.

00:37:26.880 --> 00:37:31.360
And you know, a lot of workplaces don't give you that flexibility.

00:37:31.920 --> 00:37:40.559
Sometimes just like a three or five minute walk to the coffee machine and back can give you that chance to reset.

00:37:41.039 --> 00:37:46.800
Well, that's why I believe in accommodations that are reasonable, and that's why I believe in self-advocacy.

00:37:46.960 --> 00:37:53.679
I mean, just saying what you need, you know, and I need to let you know that I just need five-minute breaks every now and then.

00:37:53.920 --> 00:37:55.440
Say it to your boss.

00:37:55.679 --> 00:38:01.039
And and they just, you know, as long as they're reasonable, there shouldn't be a problem with that.

00:38:01.280 --> 00:38:12.960
And, you know, I've often wondered, should I tell them, which I probably will never have a regular nine to five job again, but if I did, should I tell them that I have disabilities?

00:38:13.119 --> 00:38:18.960
Should I tell them, you know, or should I do a rock star job and then introduce it?

00:38:19.119 --> 00:38:21.039
You know, I've wondered that.

00:38:21.519 --> 00:38:24.559
I wondered that myself what I would do in the situation.

00:38:24.719 --> 00:38:26.800
It's largely a personal decision.

00:38:27.039 --> 00:38:27.360
Yeah.

00:38:27.440 --> 00:38:30.960
Um, I always like to go into new jobs.

00:38:31.280 --> 00:38:35.599
Uh, when I worked in television, I had a lot of self-confidence in my work.

00:38:35.679 --> 00:38:38.159
And I would go in and just be a quiet guy for three months.

00:38:38.239 --> 00:38:42.079
And then after three months, I'd be just like, ah, I'm the best, and blah blah blah.

00:38:42.239 --> 00:38:44.239
And by that point, they can't fire you.

00:38:44.400 --> 00:38:59.840
So uh yeah, I would probably wait, and then about a year or so into it, once I was successful, or you know, whatever you want to call it, achieving uh a full-time job and not getting fired, uh because it showed.

00:39:00.000 --> 00:39:03.280
Um that's it, that it showed.

00:39:03.679 --> 00:39:12.239
I was very much a perfectionist as a new shooter, and I would, you know, reposition reporters until they had it just right.

00:39:12.559 --> 00:39:15.760
They'd be saying something and saying, no, no, no, you worded that wrong.

00:39:15.920 --> 00:39:17.840
Uh maybe you should say it this way.

00:39:18.079 --> 00:39:23.119
And I got in trouble with reporters a number of times because they don't like to be told what to do.

00:39:24.880 --> 00:39:31.360
But it was my it was my name going on that report too, and I wanted it to be the best it was.

00:39:31.440 --> 00:39:32.239
So right.

00:39:32.559 --> 00:39:43.119
Well, it showed up with me a couple of times, and it really did affect my one of my jobs because um, and this was before I was able to speak, you know, in front of people.

00:39:43.360 --> 00:39:50.480
Now I'm more comfortable, but back then I was an amazing director of the battered woman shelter.

00:39:50.559 --> 00:39:52.800
I was so good at that job.

00:39:53.039 --> 00:39:59.360
Um, but my boss told me that I had to go speak, and I just went, No.

00:40:01.519 --> 00:40:02.880
That doesn't go well.

00:40:03.599 --> 00:40:04.960
Well, no, you have to.

00:40:06.000 --> 00:40:07.440
No, I don't.

00:40:08.719 --> 00:40:09.679
I can't.

00:40:10.000 --> 00:40:11.039
I'm not able.

00:40:11.760 --> 00:40:19.039
And you know they say that public speaking is one of you know society's biggest fears.

00:40:19.199 --> 00:40:22.000
So that is under yeah.

00:40:22.719 --> 00:40:25.599
But you know, it it came out in different ways.

00:40:25.760 --> 00:40:30.960
Um, but anyway, now I'm different and I'm out there, you know, I am out.

00:40:31.199 --> 00:40:34.480
Um, I everybody knows that I have what I have.

00:40:34.559 --> 00:40:38.719
So it it is a benefit in my, you know, that people do understand this.

00:40:38.800 --> 00:40:43.119
And I work at a school for kids with autism and I had the accommodations there.

00:40:43.280 --> 00:40:44.480
I think it's really important.

00:40:44.639 --> 00:40:49.840
It was important for me to finally let people know, and it made it easier.

00:40:50.159 --> 00:40:56.639
So, okay, we're gonna wrap soon, but I want to talk about um just a couple more things.

00:40:56.719 --> 00:41:01.360
And sensory processing was is it's a really big deal.

00:41:01.519 --> 00:41:12.719
You know, I was the one that wanted my tags cut out as a kid, the bright lights, the crowds, clothing textures, noise, over stimulation, the fight or flight, what you talked about earlier.

00:41:12.960 --> 00:41:18.800
But, you know, we did kind of touch on this, but it really affects who we are.

00:41:18.960 --> 00:41:25.199
When we're out there in the world, if we don't have those things in place, we can't be even in our own skin.

00:41:25.519 --> 00:41:27.039
Oh, exactly, exactly.

00:41:27.199 --> 00:41:34.480
And um, understanding how big an issue sensory uh perception is for us.

00:41:34.960 --> 00:41:42.960
If you want to make me totally angry, use a whistle right behind me, a very loud, high voice.

00:41:43.840 --> 00:41:44.000
Yeah.

00:41:44.320 --> 00:41:48.480
Well, it actually, I think, starts a panic thing in in me.

00:41:48.800 --> 00:41:59.599
I don't know what it is, but my blood pressure goes up, and of course, like I said before, I go into fight or flight automatically, and at that point I'll fight for sure.

00:42:00.000 --> 00:42:12.159
Um things like uh lighting, the temperature, eggs on clothes, the and like you're saying, this isn't something that you can just ignore.

00:42:12.400 --> 00:42:21.280
Like if the sun or the the lighting in the room is too bright, it's gonna be too bright, whether it's 10 o'clock in the morning or four o'clock in the afternoon.

00:42:21.519 --> 00:42:23.280
That is gonna be a constant.

00:42:23.519 --> 00:42:32.239
The noises that are going on around, um all of these sort of things, they build up little bit by little bit by little bit.

00:42:32.320 --> 00:42:35.199
It's like yeah, a few more drops of water, a few more drops of water.

00:42:35.440 --> 00:42:39.519
Eventually is going to be full just from the sensory.

00:42:39.840 --> 00:42:44.719
This is before we even talk about executive function or adaptive function or anything.

00:42:45.199 --> 00:42:55.760
This is just about living in your own skin, as you were saying, and that can um often we'll see it in kids that won't have a shower.

00:42:56.719 --> 00:42:57.679
Mm-hmm.

00:42:58.000 --> 00:43:00.480
I have more things.

00:43:00.639 --> 00:43:10.960
Um often, often you'll find that they love it in the shower or the bath, but it's the transition getting to the shower that can be a challenge for them.

00:43:11.119 --> 00:43:12.320
Yeah, it is.

00:43:12.559 --> 00:43:22.559
I love getting in the shower, but um, where I'm living right now is a little cold in the winter, and that uh that trip to get into the shower can be a little chilly.

00:43:22.719 --> 00:43:24.400
Yeah, so I don't need that part.

00:43:24.480 --> 00:43:29.199
So I can understand why one part might stop me from going on further.

00:43:29.360 --> 00:43:30.800
That's a sensory thing.

00:43:31.039 --> 00:43:34.079
For me, I sleep with about four blankets.

00:43:34.320 --> 00:43:34.800
Me too.

00:43:35.199 --> 00:43:54.400
I I don't have uh uh uh a weighted blanket specifically, but I have heavy old quilts, and some nights I'll need four of them, and some nights I'll only need one, and but I'm able to gauge that as I'm sleeping, as I get into bed, I'll see what's comfortable.

00:43:54.559 --> 00:43:55.920
That's a sensory need.

00:43:56.000 --> 00:43:58.559
If I don't take care of that, I don't sleep well.

00:43:58.719 --> 00:44:02.639
If I don't sleep well, Hundreds of day the next day.

00:44:02.880 --> 00:44:11.199
See, all those are the kind of things that need attended to before we even deal with what you said, with the executive functioning and things like that.

00:44:11.360 --> 00:44:13.599
Those things have to be handled first.

00:44:13.920 --> 00:44:16.559
Yeah, when you're dealing with things like screen time.

00:44:17.519 --> 00:44:23.519
Uh, for some people, they they can handle, you know, having a TV on until they fall asleep in front.

00:44:23.840 --> 00:44:27.840
Some people need to be away from it for about an hour before they can fall asleep.

00:44:28.880 --> 00:44:38.079
It all depends on the person and um how you sleep, the quality of your sleep is is vitally important.

00:44:39.519 --> 00:44:45.280
So all of these sensory things, and we get down to food, the picky food eaters.

00:44:45.440 --> 00:44:48.880
Um sometimes not the taste of the food, it's the texture.

00:44:49.119 --> 00:44:50.159
It's the texture.

00:44:50.400 --> 00:44:50.880
Yeah.

00:44:51.119 --> 00:44:52.880
And well, why don't you like that?

00:44:52.960 --> 00:44:56.559
Well, it feels like mushy goo to me.

00:44:56.719 --> 00:45:03.840
Uh, there are some some things I can put in my mouth, but I can't swallow because as soon as I go to swallow, I get on that to come on.

00:45:04.000 --> 00:45:09.280
So I never have to worry about eating oysters because well Oh, it's not going in my mouth.

00:45:09.440 --> 00:45:10.400
Oh, no.

00:45:11.119 --> 00:45:16.320
I've tried, and and just as soon as it hits the back of my throat, it's like, nope, revulsion.

00:45:16.880 --> 00:45:19.679
No, I can already see the texture in that.

00:45:19.760 --> 00:45:21.920
I don't want it, I don't even touch them.

00:45:22.079 --> 00:45:29.199
There's a lot of things I don't even touch, so it's not yeah, I'm a big texture person when it comes to eating.

00:45:29.519 --> 00:45:33.519
Each one of these issues is adding more water to that jug full of water.

00:45:34.000 --> 00:45:36.320
Yeah, and I need the weighted blankets.

00:45:36.480 --> 00:45:41.840
I have a weighted blanket, but if I'm not using that, I just I pile on the blankets.

00:45:41.920 --> 00:45:47.440
It has to be just it has to feel just right, but I need that in order to go to sleep.

00:45:48.320 --> 00:45:52.239
One of the things that I do on the road is I quite often will wear a heavy coat.

00:45:52.320 --> 00:45:56.320
I have a nice long wool coat or I have a heavy winter jacket.

00:45:56.960 --> 00:46:04.960
And what I do, because hotels have these fluffy little thin, there's no weight, I end up sleeping under my coat.

00:46:05.119 --> 00:46:10.880
Otherwise, I have a really difficult sleeping, A, in a new place and B on a bed that's not mine.

00:46:11.519 --> 00:46:15.840
C uh with my sensory needs, it can be challenging.

00:46:16.000 --> 00:46:28.639
So even something as simple as having my coat, which you know smells like me and it's heavy and comfortable, and it sits around like over top of me like a nice warm hug, I can get a little bit of sleep.

00:46:31.039 --> 00:46:37.039
It is go between sensory negative and sensory positive and find that balance.

00:46:37.760 --> 00:46:39.519
Yes, it really is.

00:46:40.079 --> 00:46:49.360
And some people, you know, um, with sensory and things like that, you need a lot of overstimulation, and some people don't need a lot.

00:46:49.599 --> 00:46:51.679
So everybody is different there, too.

00:46:51.840 --> 00:46:57.840
They're either sensory seeking or they're not, and yeah, it really depends.

00:46:58.320 --> 00:47:05.840
Sensory in integration is a big thing because what works for one might not work for the other, it might have the exact opposite effect.

00:47:06.239 --> 00:47:06.559
Great.

00:47:06.800 --> 00:47:11.679
What I might find soothing, you might find like fingers down a chalkboard.

00:47:12.000 --> 00:47:12.719
Exactly.

00:47:12.880 --> 00:47:13.440
Yep.

00:47:13.599 --> 00:47:17.920
Some of my kids really like loud music, and then the other ones can't stand anything loud.

00:47:18.239 --> 00:47:20.400
See, I kind of work in between that.

00:47:20.559 --> 00:47:26.960
I love a lot of a lot of loud music while I'm thinking, but when I'm actually doing, then I want silence.

00:47:27.119 --> 00:47:28.000
That's interesting.

00:47:30.159 --> 00:47:41.840
Some chunks are noisy and loud, and other chunks are silent because I need that where I can hear my brain giving out, barking out these instructions and what I'm doing down.

00:47:42.480 --> 00:47:50.960
When I work on some serious things, sometimes my friend will say, How in the world can you have three things going at one time?

00:47:51.840 --> 00:47:53.280
And, you know, think.

00:47:53.519 --> 00:47:56.960
And I'm like, I think better like this.

00:47:57.199 --> 00:47:59.199
You know, sometimes I do.

00:47:59.840 --> 00:48:04.320
It depends on where you are in that packaging process and and and how it works.

00:48:04.480 --> 00:48:10.400
Like I said, up until the point where I get to the very end where I'm putting it all together, yeah, it's loud.

00:48:10.559 --> 00:48:15.199
It's it's you know, um, YouTube and the same way.

00:48:15.440 --> 00:48:17.119
I'm the exact same way.

00:48:17.440 --> 00:48:19.519
The process is loud.

00:48:19.679 --> 00:48:20.960
I like things loud.

00:48:21.199 --> 00:48:25.119
And then when I really have to think, I can quiet everything down.

00:48:25.440 --> 00:48:25.760
Yep.

00:48:25.920 --> 00:48:31.039
You take all that loud stuff and you put it together nice and quiet, and boom, you've got something.

00:48:31.280 --> 00:48:31.920
Oh my gosh.

00:48:32.000 --> 00:48:34.960
Now, see, we're exactly alike when it comes to that.

00:48:35.199 --> 00:48:36.159
That's interesting.

00:48:37.119 --> 00:48:38.159
Absolutely.

00:48:38.480 --> 00:48:46.880
Well, I just want to end with Yeah, motor skills obviously are, you know, your balance, uh, strength and coordination.

00:48:47.199 --> 00:48:59.039
And um that often it shows up in a lot of people with FASD again because of uh the way the damage is is often uh seen.

00:48:59.280 --> 00:49:02.480
We have scoliosis, uh twisting of the spine.

00:49:02.960 --> 00:49:05.440
I have I have that a little bit.

00:49:06.159 --> 00:49:07.280
Yeah, me too.

00:49:07.679 --> 00:49:17.920
So um that would actually fall under motor skills because that stops certain types of movement and things like that, and I might not sit perfectly straight.

00:49:18.239 --> 00:49:20.000
So um another area.

00:49:20.320 --> 00:49:21.119
That's why we lean.

00:49:23.440 --> 00:49:24.639
Yes, exactly.

00:49:24.880 --> 00:49:25.679
And don't know it.

00:49:25.840 --> 00:49:32.800
I like I have to I have to actually straighten my shoulders so I know that they're straight, because I don't otherwise.

00:49:32.960 --> 00:49:36.079
And I've seen pictures of myself where why is my shoulder so high?

00:49:36.320 --> 00:49:38.239
And and that's something that I have to deal with.

00:49:38.320 --> 00:49:44.800
And one of the other things also is motor skills, getting the thoughts from the mind down to the pen onto the paper.

00:49:45.039 --> 00:49:53.920
That isn't necessarily a problem with any of the musculature, but it's the signal getting through that is that the problem.

00:49:54.320 --> 00:50:00.239
Okay, so that's what's going on with my son, why he has such a difficult time even writing his name.

00:50:00.639 --> 00:50:02.239
It very well could be.

00:50:02.400 --> 00:50:08.639
And um, yeah, I hadn't written in a while, and I started doing a lot of writing today, and boy, I need to practice.

00:50:08.800 --> 00:50:16.639
And I think for for me practical, but I've never had good printing or handwriting in script either.

00:50:16.800 --> 00:50:25.519
Uh and I noticed today that I would be spelling words out, but my hand would skip a letter.

00:50:26.000 --> 00:50:27.760
Wait a minute, there's an L in there.

00:50:27.840 --> 00:50:29.760
No, there's a I do that all the time.

00:50:29.920 --> 00:50:30.400
Yeah.

00:50:31.119 --> 00:50:34.559
And uh I do that often.

00:50:35.119 --> 00:50:37.760
It's not in the thought, it's in the transcription.

00:50:37.920 --> 00:50:44.079
Somewhere that I lose that letter while I'm writing, and that is uh a motor skill problem.

00:50:44.400 --> 00:50:44.960
Yeah.

00:50:45.199 --> 00:50:57.199
You know, you you touched on something, um, and I'll just i you know, if if we don't continually practice something, we lose it, and I have to do that all the time.

00:50:57.599 --> 00:51:03.280
I'm good at writing, but I'm much better at it because I'm doing it all the time.

00:51:03.519 --> 00:51:14.800
I'm much better at reading and understanding and comprehending because it's a muscle, I feel, a domain that I'm working, constantly working.

00:51:15.039 --> 00:51:22.639
But if I stop reading for a while, then it I go back to having a difficult time understanding, comprehending.

00:51:22.880 --> 00:51:34.639
You know, it's we have to constantly be working the domain in order for it to grow, for us to those synapses to connect, for the synapses to connect.

00:51:34.800 --> 00:51:40.960
And if they aren't being used, then they kind of disconnect and we have to work at it again.

00:51:41.519 --> 00:51:46.000
It's it's the same as um physical activity to stay in shape.

00:51:46.320 --> 00:51:48.800
Your brain needs that activity too.

00:51:48.960 --> 00:51:54.559
It's it's not a muscle, but it sort of responds like a muscle it does.

00:51:55.039 --> 00:52:01.119
So the harder you use it kindly, the harder it will want to work.

00:52:01.920 --> 00:52:17.519
Yeah, and um like I I feel bad for for parents who don't want their kids challenged, don't want them to experience um negatives, but those are often the best learning experiences.

00:52:17.920 --> 00:52:23.199
I tell people all the time I get everything wrong the first time.

00:52:23.440 --> 00:52:25.920
That's how I learn how to do it right.

00:52:26.400 --> 00:52:32.320
But if I wasn't allowed to get it wrong, I would never learn to get it right on my own.

00:52:32.559 --> 00:52:36.960
And learning that on my own is is that's like self-fulfilling.

00:52:37.039 --> 00:52:39.360
That makes me feel good above myself.

00:52:40.239 --> 00:52:43.039
I always felt like the Thomas Edison in life.

00:52:43.199 --> 00:52:46.320
You know, I learned a thousand ways and it didn't work.

00:52:46.559 --> 00:52:59.599
And so then I just kept doing it over and over and over, and eventually I figured one way that worked, you know, but I had to do all the wrong things in order for me to get to that point.

00:52:59.760 --> 00:53:01.920
So yeah, I mean, that's a really good point.

00:53:02.639 --> 00:53:14.000
Well, hopefully today we can save some people having to take all those extra steps and uh get them some ideas where where they can look and uh where they can find the support and the understanding that they need.

00:53:14.320 --> 00:53:24.079
Well, yeah, to every kid or person, young person, um, or newly diagnosed, I mean, anybody out there that, you know, you feel like you're failing.

00:53:24.320 --> 00:53:30.719
You know, it took RJ and myself years and decades to get where we are.

00:53:31.039 --> 00:53:39.039
Decades, in fact, of failing, you know, and if that's the word that you even want to use, because I look at them as stepping stones.

00:53:39.199 --> 00:53:43.360
I don't look at them as failures, and I'm constantly working on myself.

00:53:43.599 --> 00:53:48.239
What I would say is you have been dealt a different hand.

00:53:48.639 --> 00:53:55.440
And we're, you know, we have to work a little harder than your peers, but you do have the tools.

00:53:55.599 --> 00:53:58.880
I think that the we have the tools that we didn't used to have.

00:53:59.280 --> 00:54:09.440
Or, you know, we make our own tools, we develop our own tools, we figure out how our brain works, and we, you know, utilize it in a different way.

00:54:09.599 --> 00:54:11.440
And we can still get to the end result.

00:54:11.599 --> 00:54:14.400
I really believe that because RJ and I have done that.

00:54:14.559 --> 00:54:18.880
So you have to believe in yourself because we are really special people.

00:54:19.119 --> 00:54:20.639
I believe that 100%.

00:54:21.119 --> 00:54:26.320
And we have so much to offer, and so much that people can learn from us.

00:54:26.800 --> 00:54:31.760
Is there anything that you want to say before um I close here, RJ?

00:54:32.320 --> 00:54:36.800
Um, specifically to neurodiverse people.

00:54:37.039 --> 00:54:40.320
Um, step one is forgiving yourself.

00:54:40.480 --> 00:54:44.559
That's the hardest step of all I found was forgiving myself.

00:54:44.880 --> 00:54:48.719
I own all of the negative things that I had done.

00:54:50.719 --> 00:54:59.360
And um giving myself grace has allowed me to experience happiness.

00:54:59.519 --> 00:55:06.480
Like I am a happy old man, and I never ever could have envisioned that.

00:55:06.800 --> 00:55:08.960
So that's wonderful.

00:55:09.840 --> 00:55:13.119
But all of all of the results, they're my results.

00:55:13.440 --> 00:55:16.400
I my life to get better.

00:55:16.800 --> 00:55:17.119
Yes.

00:55:17.519 --> 00:55:25.679
So so for me, that's a very important thing that um like we we just it takes a while.

00:55:25.920 --> 00:55:30.880
You have to like stop and say, Okay, I screwed up, but it's okay.

00:55:31.039 --> 00:55:31.840
It's okay.

00:55:32.559 --> 00:55:36.239
I do that sometimes and start forgiving yourself with the little thing.

00:55:36.559 --> 00:55:37.840
Oh, I forgot my keys.

00:55:38.159 --> 00:55:39.440
Oh, I'm such an idiot.

00:55:39.599 --> 00:55:40.480
No, no, no.

00:55:41.199 --> 00:55:42.639
I forgot my keys.

00:55:42.800 --> 00:55:43.920
Sometimes I do that.

00:55:44.079 --> 00:55:46.719
It's okay, nothing's nothing's ruined.

00:55:46.800 --> 00:55:48.000
I'll just go back and get them.

00:55:48.320 --> 00:55:51.280
It's that self-conversation that's so important.

00:55:52.000 --> 00:55:56.079
So we need to forgive ourselves to be our best self.

00:55:56.480 --> 00:55:58.719
Yeah, and I'm my happiest too.

00:55:58.880 --> 00:56:01.039
I I really love that you said that.

00:56:01.199 --> 00:56:07.920
And I also, you know what I say, um, is well, I really needed my steps today.

00:56:08.079 --> 00:56:14.880
Uh because I'll go up and down the steps ten times to to settle upstairs.

00:56:15.039 --> 00:56:17.280
I'll be like, yep, I forgot my water.

00:56:17.440 --> 00:56:18.800
Yep, I forgot my phone.

00:56:19.039 --> 00:56:20.079
Oh, my charger.

00:56:20.320 --> 00:56:27.760
Oh, and I'm like, well, I just needed my steps today, so that's how I handle it.

00:56:28.400 --> 00:56:31.679
That's pretty standard here when I'm going out the door for a flight or something.

00:56:31.920 --> 00:56:35.360
My kid'll just get used to walking back it two or three times.

00:56:35.440 --> 00:56:38.559
Okay, always, always, everybody's in the car.

00:56:39.039 --> 00:56:41.360
Everybody's always in the car waiting for me.

00:56:41.599 --> 00:56:44.800
And it's that transition to leaving.

00:56:45.519 --> 00:56:52.159
And it takes my my entire system to get ready to to leave.

00:56:52.320 --> 00:57:00.239
So I let everybody go first, and I do go in and out a few times, but I need that transition.

00:57:00.880 --> 00:57:01.360
Yep.

00:57:01.519 --> 00:57:05.360
And you know, getting down on yourself for it, it doesn't help anything.

00:57:05.599 --> 00:57:11.360
So we just have to understand our brains work differently, and it's okay.

00:57:11.519 --> 00:57:12.000
It really is.

00:57:12.400 --> 00:57:13.199
It really is okay.

00:57:13.280 --> 00:57:17.119
I I absolutely love who I am, and I wouldn't change me.

00:57:17.280 --> 00:57:19.280
I definitely wouldn't change RJ.

00:57:19.760 --> 00:57:22.079
He's a beautiful human.

00:57:22.400 --> 00:57:25.199
So don't let labels bother you.

00:57:25.360 --> 00:57:30.880
Don't let the label of fetal alcohol or whatever define you in however you think it is.

00:57:31.039 --> 00:57:36.079
I mean, we are beautiful people, and we are very productive citizens.

00:57:36.639 --> 00:57:37.039
Yeah.

00:57:37.280 --> 00:57:40.159
You're you're allowed to define yourself.

00:57:40.880 --> 00:57:41.679
Absolutely.

00:57:41.920 --> 00:57:42.559
Absolutely.

00:57:42.719 --> 00:57:49.039
Don't, you know, you don't have to um other people give us the title or whatever.

00:57:49.280 --> 00:57:49.760
No, no.

00:57:51.199 --> 00:57:54.239
We take the title and make it our own.

00:57:54.559 --> 00:57:57.440
And the younger you are, you have to give yourself more grace.

00:57:57.599 --> 00:58:00.159
I think that we have to give ourselves grace, period.

00:58:00.559 --> 00:58:07.920
And sometimes as a parent or a caregiver or a friend, we have to sit out in the rain with our people for a while.

00:58:08.159 --> 00:58:08.559
Mm-hmm.

00:58:09.280 --> 00:58:10.880
Find their way into shelter.

00:58:11.039 --> 00:58:15.840
Sometimes just sitting with them in that is going to make all the difference.

00:58:16.880 --> 00:58:17.519
Yeah.

00:58:18.000 --> 00:58:23.119
As we close today's conversation, I hope one truth stays with you.

00:58:23.440 --> 00:58:25.519
FASD is not a character issue.

00:58:25.679 --> 00:58:27.599
It is not a willpower issue.

00:58:27.760 --> 00:58:30.320
It is a brain-based disability.

00:58:30.559 --> 00:58:37.440
And when we understand that, everything changes because behaviors is not the whole story.

00:58:37.599 --> 00:58:39.679
Behavior is communication.

00:58:39.840 --> 00:58:50.079
It is the brain doing its best to survive, cope, and make sense of a world that often asks too much, too fast, and without enough support.

00:58:50.239 --> 00:58:57.760
And what RJ reminded us so clearly today is this support works better than shame.

00:58:58.000 --> 00:59:02.320
Always believing in ourselves works better than blaming.

00:59:02.559 --> 00:59:09.679
So if this episode opened your eyes or softened your heart or gave language to something you've been carrying, please share it.

00:59:09.920 --> 00:59:20.960
Send it to a teacher or a therapist or foster or adoptive parent or caregiver, someone who needs to understand what is really going on beneath the surface.

00:59:21.119 --> 00:59:34.800
And please make sure to follow RJ's advocacy work because his voice, like, is just so important in this space, FASD and the families who love him, and I am one of them.

00:59:35.039 --> 00:59:38.639
Go to Flying with Broken Wings and Red Shoes Rock on Facebook.

00:59:38.800 --> 00:59:41.039
And thank you for being here with us.

00:59:41.280 --> 00:59:47.840
There is no finish line on healing, only understanding, only compassion, and only becoming.

00:59:48.079 --> 00:59:51.599
So we'll see you next time on Real Talk with Tina and Anne.

00:59:51.840 --> 00:59:52.800
Thank you for being here.

00:59:52.960 --> 00:59:53.920
Thanks, RJ.